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BMC Health Services Research
Facilitating person-centered patient
participation inkidney care—a process
evaluation ofaquasi-experimental study
incorporating atool andtraining oflocal
implementation teams
Liselott Årestedt1*, Fredrik Uhlin2,3,4 and Ann Catrine Eldh2,5
Abstract
Background The transfer of innovations into healthcare is laden with challenges. Although healthcare professionals
are expected to adopt and fulfil new policies, a more person-centered healthcare with conditions for preference-
based patient participation is anticipated.
Methods The aim of the study was to evaluate two implementation strategies for person-centered patient partici-
pation in kidney care, including dissemination of a clinical toolkit, and additional training and support of internal
facilitators. Nine Swedish kidney care units joined the study (August 2019–September 2021), strategically organized
into: a control group (three sites, no support); a standard dissemination group (three sites, with a tool for patient
participation and guidance disseminated to the site managers); and a facilitated implementation group (three sites,
with the tool and guidance disseminated as above, plus a six-month support program for designated internal facilita-
tors). This process evaluation was comprised of repeat interviews with managers (n = 10), internal facilitators (n = 5),
recordings, and notes from the interventions, and Alberta Context Tool survey data (n = 78). Hybrid analyses com-
prised mixed methods: descriptive and comparative statistics, and qualitative descriptive analysis.
Results None of the control group sites addressed patient participation. While the standard dissemination sites’
managers received and appreciated the toolkit, they made no attempts to make further use of it. In the facilitated
implementation group, five internal facilitators from three sites engaged in the support program. They welcomed
the opportunity to learn about preference-based patient participation, and about implementation, including poten-
tially enhanced opportunities for preference-based patient participation via the tool. Each site’s facilitators developed
a separate strategy for the dissemination of the tool: the tool was used with a few patients in each site, and only some
staff were involved. Although noting a general interest in improving patient participation, the internal facilita-
tors described limited local support. Rather, they suggested a longer support program and more local backing
and engagement.
*Correspondence:
Liselott Årestedt
liselott.arestedt@lnu.se
Full list of author information is available at the end of the article
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Årestedtetal. BMC Health Services Research (2024) 24:1559
Conclusions Facilitating person-centered patient participation is complex, given the need to address attitudes,
beliefs, and behaviors. This study indicates slow uptake and change, and more efficient strategies are needed
to ensure the fundamentals of care remain accessible to all.
Keywords Patient participation, Person-centered care, Process evaluation, Implementation, Facilitation, Context,
Mixed methods
Background
An increasing amount of scientific literature demon-
strates that the transfer of innovations into healthcare
practice is laden with challenges [1]. Even the imple-
mentation of high-quality evidence is associated with
barriers, linked to the knowledge in question, the con-
text into which it shall be translated, and the strategies
employed to facilitate its progression into daily prac-
tice [2]. When it comes to policies, there is often even
less evidence to begin with to promote change, but
every so often there is a norm sustaining a program
change; end-users, like healthcare professionals, are
expected to adopt essentials of such policy as part of
the implementation process [3]. While such adoption
is key for implementation, it is estimated to occur as a
result of a reasonable uptake of or agreement with pro-
posed values. This seems to be the case with, for exam-
ple, patient participation, which has been repeatedly
suggested as an ideal standard in healthcare services
[4]. Most professionals would likely be willing to agree
that they promote optimal conditions for patients to
engage in their care and health issues, although this is
not always the case; rather, further efforts are required
to understand what enables and hinders the implemen-
tation of person-centered opportunities for patient
participation [5].
Patient participation has been on the agenda for at
least 50 years, but healthcare professionals and organi-
zations still do not fully embrace their responsibility
to enable patients to engage in a way and to the extent
they prefer [6]. Although healthcare professionals wish
to engage patients, staff efforts are often based on their
own assumptions regarding in what way and to what
extent patients should participate [7, 8]. Patients, on the
other hand, may—or may not—share the same assump-
tions. In kidney care, where patient engagement is sug-
gested for a range of perspectives and activities, we
found around 50% of patients receiving opportunities
to engage in a way matching their preferences for par-
ticipation [9] (with up to 20% of the patients expected
to be more involved than they would prefer, or have
fewer opportunities to be engaged than they prefer [9]),
better opportunities to achieve more person-centered
patient participation should be implemented.
Methods
Aim
e aim of this study was to evaluate two implementation
strategies: the dissemination of a clinical tool, and addi-
tional training and support of internal facilitators (IF) for
person-centered patient participation in kidney care.
Design
e process evaluation was part of a hybrid study [10],
including the effectiveness of the intervention reported
elsewhere [11]. is study is reported considering Stand-
ards for Reporting Implementation Studies (StaRI) State-
ment [12].
Setting andsample
Nine out of eleven kidney care sites in southeast Sweden
agreed to participate in the study (two declined due to
staffing issues). Seven of these sites had participated in
a prior study, on staff and patient conceptualisation and
experience of patient participation [7, 8]. e sites rep-
resented university, regional, and local hospitals; all sites
had outpatient dialysis units, and seven of them also pro-
vided predialysis outpatient kidney care. At all sites, the
majority of staff were nurses, but all sites also employed
assistant nurses and physicians.
To ensure that the intervention and control groups
were as equal as possible, sites were strategically organ-
ized into three groups with three sites each: a control
group (CG), a standard dissemination group (SDG), and
a facilitated implementation group (FIG) (the two latter
representing intervention groups).
Interventions
Recognizing that positive outcomes are dependent on
strategies facilitating the implementation of a particu-
lar object in a particular context, the project was framed
by the integrated Promoting Action on Research Imple-
mentation in Health Services program, i-PARIHS [13]. It
tested two interventions manufactured on the following
assumptions:
1. Swedish healthcare professionals have been com-
pelled to provide for patient participation since at
least 1982 (when the national healthcare act was
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Årestedtetal. BMC Health Services Research (2024) 24:1559
introduced), and the introduction of a patient act (in
2015) and are likely aware of their obligation.
2. ere is increasing awareness of the need for per-
son-centered care, due to various efforts to improve
opportunities for patients to engage in their health
and healthcare issues [14].
3. Furthermore, many healthcare professionals and
organizations are well-rehearsed in change manage-
ment and have prior experience of addressing barri-
ers while implementing knowledge or policies into
practice [15].
Accordingly, this study established a control group
(CG; three units) which received no prompts at all for
enabling more person-centered patient participation.
To balance between providing enough support to facili-
tate knowledge implementation and taking advantage
of the preparedness of staff and organization, empow-
ering their potential to facilitate and sustain better and
safer care [13], we set up two strategies to facilitate the
implementation of person-centered patient participa-
tion in kidney care, in comparison with the CG and each
other. Both strategies are further described with theoreti-
cal assumptions in Additional file1: Table1 [16, 17]. In
short, the strategies represented:
• A standard dissemination group (SDG) of three sites
to which a toolkit for patient participation was sent
via e-mail at the start of the interventions (21 Octo-
ber 2019) to two managers per site: the first-line
manager and the head of the unit.
• A facilitated implementation group (FIG). At the
start of the interventions, that is 21 October, 2019,
this group of three sites received the same dissemina-
tion toolkit as above (also sent to the first-line man-
agers and the head of units). In addition, four months
prior, the managers of the FIG (three sites) were
asked to assign two healthcare professionals to act as
internal facilitators, IFs [18], for patient participation.
ey were solicited to consider three characteristics
when selecting their IFs: a) IFs should have an inter-
est in developing and improving clinical healthcare;
b) IFs managers and colleagues should trust them to
be able to support change and improvements; and c)
IFs should be willing to collaborate (with each other).
By recruitment of the IFs, the FIG was offered a lean
six-month intervention program, commenced the
same date as the toolkit dissemination (October 21),
ending 24 March 2020. In short, the FIG intervention
was delivered as an initial two-day meeting, followed
by scheduled monthly individual or group sessions
via video conference, in accord with the IFs’ choice of
format, for five consecutive months.
e interventions were developed and delivered by two
external facilitators, EFs [13]: one implementation expert,
also an expert in patient participation, plus a kidney care
expert. Furthermore, an introduction lecture that one of
the units had arranged (with one of the researchers on
the team, per initiative of the management) for all staff
prior to the beginning of the intervention, was offered to
all IFs and their sites.
Data collection
is process evaluation was composed of interviews
with managers (Table 1) and interviews with internal
facilitators (Table2), data from the IF training and imple-
mentation support program, and data on the local organ-
izational context from the Alberta Context Tool survey
(n = 78, nurses only), collated from Aug 2019 through
Sept 2021. An overview of the data that was collected and
employed is presented in Table3.
Individual interviews with managers and IF were con-
ducted twice: manager interviews at the start and the end
of the intervention period, and IFs at the end of interven-
tion period and in a follow-up interview one year later.
All participants received verbal and written informa-
tion about the study, including information about the
voluntary nature of their participation. In accordance
with the World Medical Association’s ethical principles
[19], [Accessed November 25, 2022] ethical approval
was obtained by the Regional Ethical Review Board of
Linkoping, Sweden (ID 2019–02748 and 2020–04296),
and all interviews were performed following individual
verbal and written informed consent.
e interviews were performed by the first author and
a PhD candidate on the research team and followed semi-
structured interview guides (based on a prior realist eval-
uation) [20]. To counteract bias, these researchers were
blinded to the intervention and control groups at the
time for management interviews. Consequently, no man-
ager was asked specifically about their experience of any
dissemination and/or implementation support program,
though could voluntarily bring this up. Understandably,
the later IF interviews (post-intervention × 2) were not
blinded. e audio-recorded interviews with managers
lasted 9–34 min and the interviews with IFs lasted 19–42
min. All interviews were then transcribed verbatim by an
authorized secretarial service.
Data also included diary notes by the IFs (three out of
five facilitators completed and submitted these notes),
notes from the researchers performing the support pro-
gram, copies of all material used and handed to the IFs,
and voice recordings from all support program meetings
of the implementation intervention.
Lastly, the Alberta Context Tool, ACT [21], was dis-
tributed at baseline (that is, prior to the interventions) to
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Årestedtetal. BMC Health Services Research (2024) 24:1559
Table 1 Managers of partaking sites
Group Manager (M) and Case
(A–I) Sex Position Interview date
Control Group (CG) MD Woman Manager 10/03/19
04/21/20
MG Woman Manager 10/02/19
04/16/20
MH1 Woman Deputy manager 10/08/19
04/14/19
MH2 Woman Deputy manager 09/30/19
04/27/20
Standard Dissemination Group (SDG) ME / F Woman Manager 12/11/19
05/13/20
MI Woman Manager 12/18/19
04/22/20
Facilitated Intervention Group (FIG) MA Woman Manager 10/04/19
04/28/20
MB Woman Manager 10/07/19
04/15/20
MC1 Woman Manager 10/04/19
05/06/20
MC2 Woman Deputy manager 12/19/19
04/29/20
Table 2 Internal Facilitator demographics
Sex Profession Type of Kidney care Diary notes No. of
interviews
Case A IFA1 Woman Nurse Predialysis x 2
IFA2 Man Nurse Hemodialysis x 2
Case B IFB1 Woman Nurse Hemodialysis - 2
IF B2 Woman Nurse Hemodialysis - 2
Case C IFC Woman Nurse Predialysis x 2
Table 3 Data collected and employed for the process evaluation
* Two sites were run by the same sta on rotation, with the same management
Data source Type of data No. of participants Amount of data
Interviews, managers Verbatim transcripts, text Ten (across nine sites) 129 pages (single space)
Interviews, internal facilitators (IFs) Verbatim transcripts, text Five (across three sites) 86 pages (single space)
The clinical intervention tool and its
support for dissemination 4Ps Distributed via e-mail to six managers
and their head of unit (in the stand-
ard dissemination group (SDG)
and the facilitated intervention group
(FIG) sites, respectively
The 4Ps: two plus two pages
The accompanying e-mail
cover letter (1 page per type
of site)
User manual for the 4Ps (2
pages)
10 PPTs for dissemination
Training and support material for IFs
in the facilitated intervention group
(FIG)
PowerPoint slides plus description
of the purpose and theoretical founda-
tion of program components
Immaterial 43 pages
Notes from training and support
sessions Handwritten reflections
of the researcher in charge of the train-
ing and support program
Immaterial Eight pages
Recordings from all training and sup-
port sessions Voice recordings Immaterial 11 h and 19 min
IF diaries Copies of handwritten or Word docu-
ments Immaterial 28 pages
Alberta Context Tool Survey 78 nurses (out of 98 responding staff)
across 8 sites* 78 surveys
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Årestedtetal. BMC Health Services Research (2024) 24:1559
all nursing staff across sites via the managers, who were
asked to share these via pigeon-hole mailboxes. ACT is
a recognized survey previously translated (and validated)
into Swedish [21], used for the measurement of eight
concepts regarding organizational context in complex
healthcare settings [22]. General reminders were sent
to the managers, asking them to nudge staff to respond.
Data were used to compare local contexts for the three
groups (CG, SDG, and FIG). Furthermore, particular
items were addressed to map context factors suggested
to impact knowledge implementation and/or change: to
what extent one’s manager a) attends to and acts to settle
issues, b) actively supervises others in their work; and c)
to what extent the team works to provide patients with
what they need; and d) how often the team performs a
care plan together with the patient and their next of kin.
Analysis
For the transcribed interviews, a descriptive qualitative
analysis was used [23, 24]. In addition, a mixed methods
analysis, as defined by Sandelowski [25], was applied to
all data, as described below.
Analyses began with the IF interviews. ese were ana-
lyzed inductively, so as to understand their experiences of
the support program, their role, and their context. Fur-
thermore, the analyses addressed what they described as
having performed and achieved as IFs.
Secondly, the IFs’ diary notes and material from the
support program were analyzed (the latter by means of
both training material and recorded sessions: a total of 11
h, including all sessions). is analysis phase employed a
deductive approach, by means of the following steps, as
suggested by Linnan & Steckler [26]: dose delivered (that
is, what content was delivered to the IFs, in what format,
by whom, when and the extent); dose received (what
parts of the support program the IFs attended); and fidel-
ity (what, if any, adjustments were made to the support
program, when, and why).
irdly, the transcribed interviews with managers
(n = 10) were added to the analysis. ese texts were
addressed with a descriptive qualitative approach (as
above), identifying what managers described they had
done, how, and why regarding patient participation at
their sites during the project’s lifetime.
In addition, all data from the support program was
analyzed, relating the ‘dose delivered’ and ‘dose received’
aspects described by IFs (and managers, if demonstrated)
to what was manifested in the planned and performed
training, material delivered, and the audio recordings.
ACT data was organized into the three groups: CG, SDG,
and FIG, as previously described, to investigate whether
there were differences in organizational context between
groups. For the analysis, non-parametric tests were used
(Kruskal Wallis and Mann–Whitney U-tests) to compare
each item; the level of significant variation between sites
was set to p < 0.05.
In the fourth and final phase, a summary of all emerg-
ing outcomes was formed, inspired by a realist approach
[27]:
1. What worked?
2. For whom?
3. In what context?
4. Why or why not?
5. With what outcomes?
Results
e findings are presented in the following order: a
report of the baseline context and the intervention deliv-
ery and refinements, followed by summaries of what
worked (or did not work); how the interventions were
perceived, and enacted (or not enacted) and why things
worked (or did not work) and with what outcomes,
respectively. Quotations to visualise the results (marked
with which profession or position it represents, with code
for site as presented in Tables1 and 2).
The kidney care context
Managers representing all nine sites considered patient
participation important. ey pronounced that patient
participation was provided for in their sites, describing
that patient participation is eminent in kidney care; it was
considered addressed because of the long relations estab-
lished with the patients with end-stage kidney disease.
“We have our way of working with patient partici-
pation… Trying really to involve the patients. is is
incorporated with all staff, although we have no par-
ticular means for this.” (Manager MI).
Further, the managers described that in general, their
staff should enable patient participation (but described
neither how this was conceptualised nor how it was
facilitated).
“I thought it was very interesting ‘cause patient par-
ticipation is a concept that we discuss. And it has
turned out it means different things for different peo-
ple. So, (…) I believe we have kept to our aim, for our
patients to be as involved as possible in their care
and treatment.” (Manager MC2).
e analysis of the ACT showed no statically significant
differences (Kruskal Wallis) in demographics between
the three groups (CG, SDG and FIG) (that is: responding
staffs’ gender, age, level of education, profession). Vari-
ables linked to employment also did not differ between
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Årestedtetal. BMC Health Services Research (2024) 24:1559
the sites (years of experience, working hours, and type of
employment). For the eight dimensions of organizational
context (leadership, culture, evaluation, social capital,
formal interactions, informal interactions, structural and
electronic resources, and organizational slack in staff-
ing, space, and time) a statistically significant difference
(Mann–Whitney U-tests) between the groups emerged
only for the latter dimension (organizational slack) in
four items describing resources: the SDG group sites had
higher reports on having enough staff to get the neces-
sary work done at baseline (p = 0.037), but reported the
lowest score for having a private space for staff exchanges
than CG and FIG (p = 0.002). For the remaining two items
where there was a difference between the groups—time
to talk about the patient care plan (p = 0.010) and time to
talk about new clinical knowledge (p = 0.047)—the FIG
group sites had the lowest reports compared to the sites
within the CG and SDG groups. An additional file shows
the results of ACT in more detail [see Additional file2].
The facilitation (interventions)
e standard dissemination and the implementation sup-
port program were mainly delivered as planned. Firstly,
the distribution of the toolkit to the managers was made
according to plan. All managers in the SDG and the FIG
described having read the included means for patient
participation and the guidance to support its implemen-
tation that they had received via e-mail. No site (besides
one in the FIG that had called for and arranged for a pre-
intervention seminar for all staff with one of the external
facilitators) made contact or requested further support,
although such seminars were advertised as free and
available.
In the FIG, one site assigned only one IF (rather than
the suggested two). Other adjustments regarded the web-
based support: following the face-to-face start of the
implementation, the support program was offered per
site or jointly. e first two meetings were held per site,
followed by a joint meeting, as suggested by the program.
In addition, the third meeting was proposed and per-
formed as joint meeting. At this point, the IFs expressed
that they preferred the two final meetings be joint (rather
than per site, as proposed by the EFs).
Midway through the implementation support program,
when the IFs asked for support on how to assemble and
capture patient reports by means of the 4Ps tool, one of
the EFs constructed and shared two means: a means to
assess an individual’s reports over time, and/or one for
assembling and assessing a number of patient reports at
one time point.
e IFs described the implementation support program
as rich in content. It had contributed to their increased
understanding and opened up new perspectives. External
facilitators were described as affirming, enthusiastic, and
encouraging. e group meetings had become valuable
for exchanging experiences regarding working meth-
ods, and contributed to new ideas, problem solving, and
support.
“I thought the support programme was very good; it
helped me understand the 4Ps tool. And, I learned of
the studies reinforcing it. And how it’s used, thoughts
on how to apply it. So it was worthwhile, rather than
just being handed the tool. If you understand more,
you can explain to your peers how to use it… Mak-
ing it easier to motivate. (IFB1).
As all IFs came from the same context—i.e., kidney fail-
ure care—and accordingly, there was an understanding
of each other’s context. e arrangement of initial physi-
cal meetings and then digital meetings was described as
positive.
What worked (or did notwork): howtheinterventions
were perceived, andenacted (or notenacted)
e managers found the tool (delivered to the standard
dissemination and implementation support sites) to be
appropriate and interesting. None of the managers com-
mented on the support and guidance that accompanied
the tool. Furthermore, no managers made any additional
efforts to address patient participation in their site. Nei-
ther did they describe any additional efforts to address
patient participation beyond the point of reading the
e-mail with the toolkit for how to promote person-cen-
tered patient participation. Rather, the managers sug-
gested that since their staff already provided for patient
participation, they had no reason to suggest supple-
ments; if the 4Ps tool was to be employed, it would either
confirm current practice or could potentially lend a more
accurate representation of the patients’ perspective on
patient participation, according to the managers. For any
further activity, the managers in the FIG suggested that
they had appointed the IFs for such a commission.
For the IFs of the implementation support sites, there
were opportunities to work with the implementation at
each site between program meetings. e IFs had focused
on the tool suggested in the intervention, the 4Ps, which
was perceived as an aid to promote patient participation,
by means of aiding the dialogue between patients and
staff. e three sites’ IFs addressed implementation in
different ways, as illustrated in Table4.
In one site, the IFs made a plan for the implementation
of the 4Ps tool, starting with involving a few colleagues
while notifying their managers and all fellow staff about
the plan. After this, they included some patients to com-
plete the 4Ps tool, although not as many as they initially
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Årestedtetal. BMC Health Services Research (2024) 24:1559
planned to include. ey described having support from
their managers, who emphasized the importance of all
staff to work in accordance with IF plans and to coordi-
nate their efforts toward the same goal.
In two sites there were no strategic plans procured
for the implementation; the IFs worked with imple-
mentation, primarily of the 4Ps tool, but described it as
spontaneous.
Why things worked (or did notwork) andwithwhat
outcomes
e managers of the SDG and FIG sites referred to
already-established working methods for person-cen-
tered care, engaging patients in their care. However, they
also reflected a lack of a common strategy and approach
to patient participation. e toolkit dissemination did
not bridge any barriers to address these issues.
For the implementation support sites, FIG, the data
(that is, recordings and external facilitators’ notes)
claimed that the IFs turned to the tool and its implemen-
tation, rather than to the more general issue of patient
participation like person-centered opportunities to
engage in one’s health and care issues as a patient. More-
over, the external facilitators found the joint meetings of
the program to initially aid local progress, when the IFs
shared what they had done and what had worked. How-
ever, over time, the external facilitators identified that
the IFs increasingly compared themselves to each other,
imparting any status quo by claiming why they had not
made any similar attempts or taken actions.
e IFs described difficulties in implementing the ideas
they had from the program; they suggested that they
would have needed to spend more time and energy to
make it work.
”You realise that there’s a lot more to do, to imple-
ment things. And perhaps, it requires more of per-
sistent work… with repeated information… and that
you keep at a certain issue, being more stubborn on
what’s to be done. And to encourage and such… one’s
own attitude is very important then.” (IFA2).
In addition, the IFs proposed that the intervention sup-
port program was too short; organizational factors such
as too many patients, a high workload, colleagues on sick
leave and/or vacation, and staff shortages were consid-
ered to hamper any implementation—in this case their
implementation of the tool to address person-centered
patient participation. Other parallel quality projects also
made it difficult to engage colleagues in their efforts to
make the implementation of patient participation work
in practice.
Furthermore, once the intervention came to an end
the COVID-19 pandemic created a further shortage of
staff, making it harder for the IFs to advance and include
additional patients as intended. Rather, at this point,
staff were reallocated to other units, leaving kidney care
with resources for only the most fundamental care, and
patients’ face-to-face visits were cancelled whenever pos-
sible (protecting both the individuals from risks and ena-
bling staff relocation).
Overall, the IFs described their role as facilitators of the
patient participation implementation as more complex
than they first imagined. ey appreciated the learning
opportunity and acknowledged that they had learned
a lot from the support program (about both patient
Table 4 FIG site activities, described by internal facilitators
Case Activities IFs’ reections
A • Regular reconciliations between the IFs
• Informed managers and other colleagues; used the PowerPoint presen-
tation provided
• Involved other nurses early in the process
• Started on a small scale and then expanded with more nurses
• Adapted information to included nurses
• Had follow-up meetings
• Tried different approaches to involve patients
• Estimated time spent: a couple of hours a week
• Did not experience any problems to reach out with information
• Managed to stick with the original idea and plan
• Things turned out as planned but with
fewer patients than anticipated
• Lack of control over which patients were included
• A fun and exciting project
B • Did not prioritize the project
• Talked about patient participation at a workplace meeting
• Estimated time spent: short discussions, a few minutes,
between the two IFs
• Wish they have done more activities and spent more time
on the implementation
• Clearer leadership would have been needed to succeed
C • Worked on the intervention singlehandedly
• Informed colleagues about the project
• Estimated time spent: a couple of hours each week, alongside regular
nursing tasks
• Difficulties reaching out to and including other staff
• Lack of time and staff shortages at the unit
• Alone as IF, missing a partner
• IF’s expectations and ambitions not matched by peers or managers
• Developed own ability for self-reflection
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participation and knowledge implementation). If asked
again, they would accept such an IF assignment. ey
described that they had learned more about their own
attitudes and behaviors when engaging in direct patient
encounters while providing kidney care. is enabled
them to focus more on the patient’s agenda, which was
considered a new and different way of thinking, ensuring
greater flexibility for their patients. is was described as
difficult to incite in others but was considered more of an
individual trajectory.
Despite their hardships, none of the IFs had asked for
more support from their managers. Rather, noticing how
their own ideas of patient participation and the oppor-
tunities they identified to improve the standard of care
in their sites had altered—including addressing patients
with regard to their preferences for and experiences of
participating, they suggested that changing the norms of
their workplace would require more time (rather than the
six months that the intervention support program pro-
vided), and more people engaged in the process.
Discussion
Recognising the patient voice and choice has been
described as important for both patients and staff in the
kidney care context [28]. While managers in this study
described the kidney care context as commonly associ-
ated with patient participation, the conceptualization of
patient participation was previously found to vary [8]:
not only did patients and staff have different priorities
[29], but patients suggested that their engagement var-
ied, over time and with respect to their condition [7, 30].
is calls for further dialogue in healthcare encounters
regarding enhanced person-centeredness in kidney care
[31]; this project aimed to facilitate such amendments,
with increased awareness, and means to sustain dialogue.
e findings indicate an unconvincing impact of the dis-
semination strategy, and some (albeit slow and limited)
influence with added support to internal facilitators, IFs.
Prior to the intervention, roughly 50% of kidney care
patients were found to have had opportunities for par-
ticipation matching their preferences; while almost every
second patient did not, every fifth patient had a complete
mismatch between their preferences for and experiences
of participation [9]. During and following the interven-
tion, there was no evident effect of it, but even with more
preference-based patient participation, up to 12% of the
patients were not sufficed with conditions for engage-
ment matching their needs and resources; most often,
this represented a preference to be more involved in
their health and healthcare matters than facilitated [11].
is paper signifies that while both managers and the IFs
appreciated the potential and actual support of the study,
there were limited actions taken beyond those pertaining
to a few individual patients, and some staff. We suggest
this is primarily due to the innovation–context interplay
[32] (but will return to the facilitation strategies later):
A. Regardless of the often frequent contact and long
relationships established between patients and staff,
particularly in dialysis care, encounters in kidney
care are charged with the many technical aspects
of lifesaving treatments. To have safe and effective
procedures, processes have been streamlined, some-
times failing to recognize the more person-centered
aspects of the people who are patients in kidney care
[33, 34].
B. Patient participation is presumably a comprehensive
concept, designating a humanistic stance for more
person-centered care [35], yet is potentially challeng-
ing to apprehend and convey in everyday encounters
without support [36].
Hence, it is reasonable that while both interventions
aimed for a more general implementation of improved
conditions for preference-based patient participation,
the significance of considering the concept of patient
participation was lost. A divergent conceptualisation of
patient participation between staff and patients lingered
[37], mainly steered by the staffs’ idea of how to promote
engagement in health and healthcare. Yet, much like pre-
vious implementation efforts, the internal facilitators
focused the tool rather than emphasising the potential
need for more personcenteredness [38]. In hindsight, an
alternative would have been to facilitate a patient-medi-
ated intervention [39], recognising patients’ resources
for learning of their participation and sharing of their
lived experience [40]. e potential of addressing patient
needs merit further investigation, although the fatigue
that often occurs alongside severe chronic kidney fail-
ure [41] may exclude this option for patients undergoing
hemodialysis (but may work in self-administered dialysis
or outpatient care when in predialysis).
e focus on the patient participation tool can also
be seen in view of the implementation fidelity; i.e., the
degree to which the intervention was adopted and imple-
mented as intended [42]. e IFs appreciated the sup-
port program, and while they described having altered
their attitudes and engagement with their patients, they
neither had nor attracted the resources required to facili-
tate a corresponding adoption among their peers. Rather,
both managers (in SDG and FIG) as well as IFs (FIG)
emphasized time as a crucial factor—here, a barrier—to
addressing more person-centered patient participation.
Consequently, the focus of the IFs and managers can be
the operative mode connotated by the kidney care con-
text, or simply a lack of time and energy to address a more
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 9 of 11
Årestedtetal. BMC Health Services Research (2024) 24:1559
major change in attitudes and routines. Healthcare man-
agement means engaging staff to craft a culture confident
in making the necessary changes for the benefit of better
and safer care [43]. Across these nine sites, the managers
trusted staff to already facilitate patient participation, but
the IFs described it as hard to ensure that enough time
was set aside to work on the implementation of more
person-centered patient participation. is is consistent
with findings showing that time and work pressure are
common barriers to enhancing patient participation, and
nurses tend to focus on their tasks rather than integrat-
ing patients’ needs [44]. Another limitation highlighted
by the IFs was staff shortage, making staffing a priority.
is can procure an attitude among staff that their abili-
ties to affect and change routines are limited, which in
turn can prevent their involvement in future implemen-
tation of new innovations. A task-oriented management
approach is known to hamper knowledge implementa-
tion [43], particularly when it comes to changes to nurs-
ing practice in favor of more person-centered care [44].
is would need to be further addressed in future pro-
jects and events.
Despite their hardships, the IFs grappled with the
intervention on their own. e managers, on the other
hand, expressed both that patient participation was
already procured and that there was a lack of a common
strategy and approach in terms of patient participation
at their units. is indicates a need for a stronger rela-
tionship between managers and facilitators in knowledge
implementation [43, 45]. is has lately been highlighted
as a need to address both first-line managers, and upper-
level management to facilitate implementation [46]. Pro-
moting a fair context and scaffolding a person-centered
context, managers’ attitudes to change need to focus on
improvement processes, with first line managers acting
as role models if and when new methods and evidence
are introduced [47].
e facilitator role is complex, requiring knowledge
both about implementation and the innovation in par-
ticular [48]. Efforts to facilitate IFs in this context and/
or with the intention to improve person-centered con-
ditions for patient participation would presumably
benefit from a more detailed mapping of their barriers.
is would include attitudes about the innovation and
contextual factors, boosting IFs’ ability to tailor plans to
bridge obstacles, and to envisage what enabling factors
are available and/or can be accessed [42]. Changing staff
attitudes towards more person-centered patient par-
ticipation opportunities will likely take time and require
further joint efforts, requiring a supportive healthcare
environment for both patients and staff, and the adop-
tion of change-oriented leadership [43, 47]. Our find-
ings reinforce that IFs should serve in pairs or in teams,
collaborating with management [43]; managers are vital
in balancing external requirements with internal pro-
cesses, and in encouraging and implementing new ideas
[49]. While the kidney care context remains focused on
patients’ opportunities for learning about their condi-
tion and treatment and providing such options [50], we
suggest additional recognition of patients’ resources and
preferences for being engaged would further meet calls
for more person-centered care [51].
Limitations
In spite of the intervention data on the planned and pro-
cured dissemination and support program, in addition to
the IFs’ diaries and the interviews, details on how the IFs
adopted and proceeded with the implementation in eve-
ryday working life were missing; the IFs diary notes were
scarce (and described mostly practical activities), pictur-
ing a task-oriented approach. ough three out of the five
IFs completed their diaries, any generalization of their
plans is to be carefully interpreted. For context, we used
both the Alberta Context Tool survey, and interviews
across all sites; while this provided a picture of important
contextual factors [52], such as available resources, there
were negligible differences in organizational context
according to results from the ACT analysis, making the
three groups comparable. Further, any previous engage-
ment in focus group discussions to explore the concep-
tualisation of patient participation [7] did not transpire
in the current interviews. Since the interviews with the
managers were guided by queries at a general level, fur-
ther details about the implementation process may have
been lost. On the other hand, this approach warranted
less bias risk at that point. Still, a deeper understand-
ing of both the contextual factors and the reach of the
intervention(s) would have been facilitated by further
staff interviews, illuminating if they had been addressed
by their IFs and/or managers, and what worked in terms
of the interventions. Any further evaluations of a refined
implementation strategy to facilitate preference-based
patient participation should include details grappling the
costs of the intervention relative to outcomes [53].
Conclusions
Knowledge implementation is acknowledged as complex,
even if the innovation to be implemented is well-known
and appreciated. In this study, both managers and IFs had
a positive attitude regarding patient participation, but
the IFs described limited readiness for preference-based
patient participation. While all sites’ managers suggested
that patient participation is innate in the kidney care con-
text, a perceived lack of time and a lack of relevant man-
dates hampered both managers and IFs when it came to
facilitating more person-centered conditions. e IFs
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 10 of 11
Årestedtetal. BMC Health Services Research (2024) 24:1559
partaking in the support program increased their knowl-
edge and understanding, which helped them reconsider
how they enabled patient participation. is indicates a
slow uptake and change, with benefits for some patients.
More efficient strategies are needed to ensure patient
engagement as a fundamental of quality of care is acces-
sible for all.
Abbreviations
CG Control Group
FIG Facilitated Implementation Group
IF Internal Facilitator
SDG Standard Dissemination Group
Supplementary Information
The online version contains supplementary material available at https:// doi.
org/ 10. 1186/ s12913- 024- 11990-1.
Additional file 1. Table 1. Overview of the intervention components, deliv-
ered to the SDG and FIG sites, respectively.
Additional file 2. Comparisons at group level for each ACT item/variable.
Additional file 3. Interview guide- Internal facilitators.
Additional file 4. Interview guide Managers.
Additional file 5. StaRI-checklist-for-author-completion.
Acknowledgements
PhD candidate Caroline Hurtig (CH) was involved in the data collection,
performing managers’ and IF interviews, for which the team of authors are
very grateful.
Authors’ contributions
LÅ and ACE planned the project and ACE supervised the data collection
and analysis; LÅ collected data, with assistance of a PhD candidate, and LÅ
performed the analysis and process evaluation. FU analyzed the ACT data. LÅ
drafted the manuscript, in dialogue with ACE. All authors contributed to the
discussion of emerging findings, and provided input to the final manuscript.
Funding
Open access funding provided by Linnaeus University. This study was sup-
ported by research grants from the Medical Research Council of Southeast
Sweden (FORSS-930678, FORSS-939775 and FORSS-968285) and the Swedish
Kidney Foundation (F2018-0036).
Data availability
The datasets used and/or analyzed during the current study available from the
corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
Ethical approval was obtained by the Regional Ethical Review Board of Linkop-
ing, Sweden (ID 2019–02748 and 2020–04296). Verbal and written informed
consent was obtained from all study participants and they agreed to the
representation of findings at site level (without identifying details for individu-
als). All methods were carried out in accordance with relevant guidelines and
regulations.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Author details
1 Faculty of Health and Life Sciences, Department of Health and Caring Sci-
ences, Linnaeus University, Kalmar/Växjö 39182, Sweden. 2 Faculty of Medicine
and Health Sciences, Department of Health, Medicine and Caring Sciences,
Linköping University, Linköping 581 83, Sweden. 3 Department of Nephrol-
ogy, Region Östergötland, Linköping 581 85, Sweden. 4 Department of Health
Technologies, Tallinn University of Technology (TalTech), Tallinn 19086, Estonia.
5 Department of Public Health and Caring Sciences, Uppsala University, Upp-
sala, Box 564, 751 22, Sweden.
Received: 9 July 2023 Accepted: 22 November 2024
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